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Report It Right

Report
It Right

In a time where the
future is uncertain, Danie Tregonning
and Hayley Cafarella take whatever life throws at them with a positive attitude
and a sense of humour, which is crucial considering their disabilities.

The interesting aspect
of their disabilities is what each girl has is considered a ‘silent
disability’.This means, that they are
not permanently in wheelchairs, or have a disability that is visible all the
time.

Hayley has Complex
Regional Pain Syndrome (CRPS). The cause can be any sort of injury, and
sometimes it just happens in people for no reason at all.

Hayley’s disability
began after she twisted her ankle – which was something where her “nervous system never registered healing from
the injury”.

She explained, “Instead, the pain gets stuck in a loop where
the nervous system is constantly reporting to the brain that the area is
injured. The brain feels the pain and gets very confused by the constant alarms
going off, it does things like send in swelling and messing about with blood
flow to try and heal like it would if there were actually damage there. The
cycle just keeps repeating and repeating, with the pain being much more intense
than any injury would warrant”.

“The "regional" part comes in because of how the brain
interprets different areas of the body. Instead of just being confined to the
injury point, the symptoms extend to the entire region (the brain is just
really, really confused).”

This disability is
often labelled as a ‘silent disability’, as Hayley has no constant
disfiguration, or requires a wheelchair or waking sticks all of the time.

This has been difficult
when trying to explain to others what is wrong as because they cannot see it
physically, so they do not believe her.

In Hayley’s case, she
has often had to “…share pictures online
(ie. when she has a really discoloured flare, in which case her hand will
completely change colour when its position has been changed slightly and is
bright red) so that people can kind of see what's wrong with me. If I need to
use a mobility aid, people can see that, but they can't obviously see why I'm
using it.”

This is often
frustrating for her, “…Sadly there are
those that then assume that the sufferer is crazy and the pain is a
manifestation of that.”

Hayley’s future
employment is uncertain as she cannot predict when the pain will form and how
long it will last for. “Even simple tasks
like driving and studying can be extremely difficult for me”, she said.

The uncertainty of her
disability proves unreliable as many employers are not willing to take on the
responsibility of someone who may need to frequently turn down shifts.

Danie however, has “small fiber PN (peripheral meaning both
sides, neuropathy meaning sick nerves)” and relies on walking sticks the
majority of the time, as she has constant “numbness
and relies on walking sticks the majority of the
time, as she has constant “numbness and pain in both hands and feet and the
pain continues up her legs”. If Danie needs to stand for long periods of
time, her disability worsens.

The result of this
caused her to leave her retail job, which she loved. She especially loved
proving to the HR department she was just as capable as other staff members and
even ended up running her own department.

Danie found customers
and other staff members did not treat her any differently, and was even
infamously nicknamed by staff and regular customers, “3 legged sales assistant”, which she looks back at fondly.

Her future employment
also remains uncertain. She thoroughly enjoyed working in retail, but as she
finds it difficult standing for long periods of time, she is uncertain what
kind of job she will be able to perform.

It is unfortunate that
both Danie and Hayley need to prove to others that their disabilities are there
and are just as serious as other disabilities, where you can physically see
them.

They both have a
serious disability which affects them just as much as someone who may have a
mental illness.

For
the moment, Danie and Hayley spend their time blogging, tweeting and attempting
to regain some sense of normalcy in their lives. Luckily, they have both kept
their sense of humour which Danie feels
“is completely necessary when life throws the unexpected”.